Saturday, July 7, 2012

So the fourth came and went leaving gassy streaks of firework
haze fading into a starlit Oregon sky– the smell from lit cherry bombs and barbecues
sifting through the landscape, spilling over vegetable gardens and soccer
fields.Sean and the dog, Duncan took
turns looking surprised, frightened, tense, fleeing the deck, hiding in the
basement.Sean said in a breathy gasp,
“Who likes fireworks! I don’t!” and the dog barked in complete agreement.

We were invited by dear friends to a cook out but we have
tried that in the past and it hasn’t always turned out so well so we
declined.Little kids racked with
excitable laughter and gripping Sparklers in their eager hands while Sean falls
into screams begging us to leave, to go into the car.Pretty much describes our past eight Fourth
of Julys.

We usually try to get him to sleep before dark before the
skies pop like an electric kaleidoscope and the earth rattles.We double up the melatonin and draw the
shades, put on soothing music and a fan for white noise – create nighttime a
bit earlier.My husband and I make our
way out onto the deck to hear the neighbor kids lighting off witch’s cauldrons
and M80s taking us back to our own childhoods where we lit snakes and threw
snaps and waited for someone to show up with the illegal fireworks that would
lick and spit fire into a humid night.

This Fourth of July I thought about the whole concept of
Independence.My oldest son left with
classmates on a cross continental flight, floating above the United States,
across the Atlantic, changing planes in Amsterdam then onward to France.He is thirteen, a boy really by all accounts,
and yet he carries his independence like a victory flag perched on his
shoulder, occasionally swinging it back and forth announcing his entrance into
the world.

He sent no messages, made no phone calls for five days.Only after a somewhat frantic text from me
did he reply – short and sweet: “I made it to the top of the Eiffel Tower.Ok on money.I am in Barcelona. Train was great.”Twenty short words and that is all – he has been with me his entire
lifetime, this is the first time he is travelling without family, without
someone that swam out of the same DNA pool and he is adjusting fine, no fear or
sadness, no missing us.

It’s a good thing, I know.My husband reminds me this as does my father.“You wouldn’t want him calling you in tears
saying he wants to come home, right?”Correct, I wouldn’t want that.I’m proud of his maturity and his ability to adapt and I think he’s glad
to get a break from the stressfulness of our household – summers with Sean can
be difficult, a roller coaster ride and not the type that you can’t get enough
of but more the type where your stomach sits in your throat and at the end the
safety harness doesn’t release and you are strapped in having no choice but for
another go around, loop after loop, upside down, right side up, stop and
go.

And then there’s Sean, my sweet, freckled face red head who
at eleven struggles to turn on the DVD player or toast bread.He’s the other end of it all, a child who
can’t survive very long without us – an eleven year old boy that sees a murky
pond in the woods and runs so far ahead of us, kicking up rocks and dust, his
voice wet with tears, crying for his bathing suit – my husband and I unable to
catch the lightening fast, sure-footed boy who runs deeper into the trees and
brush until he falls apart and we follow his screams only to find him
completely lost, unable to remember how to get back home.

He has very little independence, his future weighs heavy on
our hearts, we say things to each other like, and “We have to live a long time.
We have to take care of ourselves.We
can’t die young.Who could take care of
him?All he has is us.Take your vitamins.”

The summer has just started and yet somehow it feels like it
has been an eternity.Sean is with me,
all day.I am not only his mother but
his only companion, his best friend and sometimes I am his nemesis, an angry,
exhausted 43 year old woman who doesn’t want to look at a calendar with him for
the 100th time or go over everyone’s birthdays again – didn’t we
just do that two minutes ago?

I try to remind myself that he can’t help it – his obsessive
need to repeat things over and over, to ask me the same, silly questions again
and again, and the sticky thoughts glued to his head that crawl in and out of
his worried mind, making him fall to pieces, throwing himself on the floor, the
tears, the screaming and pain so raw you could almost hold it in your hands,
arms.He cries over forgetting his
lunchbox on Thursday, April 18th.I tell him, ‘but that was so long ago, it doesn’t matter’.But somehow, to him, it’s the only thing that
matters and it breaks him down.And I
don’t know what logically I can say to calm his worries, to make it go away
–not in the moment and not forever.He
will bring it up again and again out of the blue and all I can think is ‘here
we go again, hang on.’

And some days I’m not sure if I can hang on if I can rely on
my grip to be steady.Sometimes I want
nothing more than to let go, run and hide, refuse to hold his hand while he stumbles
through the tangled forest of anxiety that lurks in his mind and body.Some days I don’t have enough for him and
certainly have nothing left for anyone else or for me.I want to crash into bed and fall into a coma-like
sleep dreaming of a day that might be different but knowing deep in my bones
that he won’t be free from all the trappings of autism.

At the end of a bad day that’s what keeps me going.If it feels like this for me I can’t imagine
how hard it must be for him, to live in the skin of it, to feel so much and
have little control. I can’t fix it for
him but I can try my best to make him feel less alone and not abandoned.It’s the least I can do for him. He is doing the best he can.We all are trying our best.

Monday, April 16, 2012

I wanted to pass along a link to any of you who enjoy finding and reading blogs about autism. Recently, my blog was selected to be on a list for Most Inspiring Blogs From Parents of Children with Autism. What a nice surprise! The website compiled a great list of blogs for anyone including parents, grandparents, friends and family who are looking to connect, understand and learn more about children and families who deal with autism on a daily basis.

Saturday, April 14, 2012

I haven't been writing much. At least in the realm of Sean and autism. I've manage to keep up with my writing class and for some reason or another, focused on other topics and even started writing fiction again. For some reason, I didn't know what to write about when it came to my life with Sean and dealing with autism. I felt a need to back burner the topic -- a bit of a break from the microscope magnifying my constant thoughts and worries.

In the three months that have passed since my last entry things have been steady. Sean had a surprisingly good winter. Usually winter and summer are the toughest seasons to navigate for entirely different reasons. Winter, for the lack of sunshine, abundance of rain and darkness,a feeling of grayness seems to overtake us and we move about like tired ghosts, bumping into each other, not careful of each other's spaces or moods. We are selfish and seem to operate in survival mood, carving out bits of good moments and gobbling it up, never wise at saving for the tough days or creating a contingency plan.

We did travel to Mexico and did our best to absorb as much Vitamin D as our frog belly white bodies allowed us. Sean was in his glory when he saw an elephant seal tag a ride on the back of a fishing boat scrounging for throwaway fish entrails. And one evening at sunset on a catamaran we saw an enormous humpback and two gray whales break through the glassy pacific like covert submarines,their huge bodies arched against the fiery sky, and spout a fountain of water into the cooling air. Sean just about jumped out of his skin for joy. The icing on the cake was the next day watching sting rays leap like giant sea birds from the waves at the beach, dozens of them taking flight for a brief moment before crash landing back into the breakers.

And Sean had his big competition for downhill racing at Mount Bachelor in Central Oregon for Special Olympics. I had to take him there solo for the first day while my husband, his ski coach who had been training with him all season, was travelling for work. It had been a few months since I had skied and the last time I had was when I tore my calf muscle so to say I was a bit reluctant was an understatement.

Somehow we managed to do it, although at one point, Sean's ski came loose from his binding, he then fell to the ground, screamed and pounded his fists in the middle of the run for what seemed like forever. Meanwhile I had to take off my skis, hike down to him with another mom, tears bulging behind my goggles and calves burning, get him back into his skis, hike back to my skis and poles and get back into my bindings while being vertical -- this took a good fifteen minutes while sweat and tears poured down my face and Sean went flying down the mountain yelling for me. We decided to make that the last run of the day!

Any time we do a Special Olympics event it always gives me a greater appreciation for those who volunteer and dedicate their time, patience and talent to help people like my child; not to mention the athletes who embody such camaraderie, hard work and sportsmanship. I think of my older son who plays hockey and all of the complaining that can be heard about a child not getting enough time on the ice or a bad call by the ref and I can't help thinking how many of us just simply miss the point and how easily we can be reminded of what really matters. When we left the mountain and headed back to Portland I felt refreshed, my priorities adjusted and checked.

I wanted to include a quick link from the Special Olympics event. There are a couple pix of my little guy Sean in the red ski coat and blue helemt with the bib #68. I couldn't have been happier with my speed racer -- even if, a few times on the mountain he told me point blank, "You go home. Where's Dad?!" I get it. There are things I'm good at and there are things Dad is good at. Remembering sunblock, packing a favorable lunch in his backpack and fast forwarding previews on a movie are mine. Skiing, taking him to the climbing gym and anything that seems to be an adventure is Dad's. I guess we make a good team.

Please check out the link. It's a wonderful montage of pix and helps put most things into perspective not to mention it always makes me smile...

Wednesday, January 4, 2012

2012 tumbled in like salty, fidgety waves, knocking us off our haunches, ill prepared and dazed by the rushing of time. My husband and oldest son headed to Boise for a New Year’s weekend of hockey while Sean and I held down the fort, trying to fill the final three days with activities and movement while maintaining laundry and sanity at the same time.

Almost three weeks off of school and Sean had been itching for more of a schedule and I was near a fever for life to return to normal (kids back at school, caught up with work and chores). The pine needles from the Christmas tree shed like dust across the floors and the fireplace and I counted down the days of Christmas like a rocket ship readying for blast off.

On New Year’s Eve Sean and I went to Red Robin to burn up a gift card. Sean promptly mumbled his order to the hostess,

“How many for dinner?”

“Chicken strips and Sprite. And Ketchup.”

“I’m sorry?” she smiled, pressing the menus against her chest and bending down toward him to get a better listen.

“It’s okay. He’s just telling you what he wants. Sean, she’s the hostess. You have to get seated and then you can tell the waitress.”

We went at 3:30 in the afternoon. A nice lull in the day, the tvs set at a lower hush and the booths and tables barely full.

He proceeded to take off his hoody, his t-shirt peeling off too,

“Okay, Muscles, you gotta leave that on,” I said, grabbing the bottom of his shirt and pulling it back down, covering up the flash of frog belly white ribs and stomach that appeared.

He unwrapped the crayons from the cellophane and began to write letters. He spelled Edward. Then Evan. Next was Kangaroo. Followed by Lizard.

The waiter sidled up next to us asking if he could start us out with something to drink. Sean gave his spiel and I gave my order as well – our restaurant experiences hadn’t been stellar in the past so thought it best to move things along.

Sean did remarkably well. He didn’t try to wrestle the top of the ketchup and slam 16 ounces “down in one” chug. He used his napkin. He said thank you. He did announce that he had “to pee” pretty loudly but did a good job of using the washroom by himself and washing his hands.

I paid the bill and we headed over to the bookstore to let Sean pick out a book with a gift card. Sean headed towards the back shelves where the kids' books were and I let him explore a bit on his own. I looked at the new fiction and checked out some of the juvenile fiction. A few minutes later Sean came up to me with the book he selected – a large Winnie the Pooh book with buttons on the side that made cute, little kid noises. It was the type of book you would buy for a toddler, certainly not a boy who will be turning eleven in a few days.

A weight of deep sadness sank like a stone in my chest as I watched him cradle the book in his arms, holding it and pushing the buttons. I saw all the Harry Potter books and the Diary of a Wimpy Kid series and the other, clearly more age appropriate books that surrounded him. And here he was, a boy of almost eleven, clinging to a child’s book, with no sense of awareness or any kind of embarrassment, his eyes wide with delight and a lovely smile.

I have been wrestling with how I have been feeling about this – I’m not sure why this moment held such sinking grief for me. I suppose if he is happy that should be enough. It shouldn’t matter. But it does, you know. It makes me afraid. I am worried at how vulnerable he is. How little he still remains. How small he really is. And how necessary it is to soldier on and protect him and be there for him.

Even trying to write about this has been a major roadblock in my mind and heart. I don’t know if I can really articulate it well at this point or if I have to just compartmentalize it for the time being, for the sake of it all, to be able to move forward, to avoid that sinking feeling.

I did do some searching and stumbled across something that gave me pause. In all places it was from the author of Winnie the Pooh himself, A. A. Milne. What he wrote rang so completely true to what I felt when I saw Sean with the toddler book that I felt sloppy tears hit the keyboard as I read it. It said,

“If ever there is tomorrow when we're not together... there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”

I hope that’s true. That those words are not only my words for Sean but also Sean’s words for me and that somehow we both can live up to that promise. For the time being, it softens the idea of Sean alone in the world, holding onto a child’s book. It gives me some sparkle of hope that we all have a reserve of strength and courage greater than what we know or understand.

About Me

Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.

Helpful Resources

The Mom Blogs

Mt. Hood

Autism Study: Simons Simplex Collection Project

What is the purpose of this study?The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

Whom should I contact to get more information?Emily Champoux, Project CoordinatorToll free: 1-800-994-9701 or 206-616-2889 Email: emchamp1@u.washington.eduAdditional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html